Diagnosis to now

Saturday, March 14, 2015

Lou's recent scan results after radiation and closer to an asbestos ban in USA

Hi all

After a few days of fatigue and resting I am now sitting at the main computer ready to type this blog.

Last Tuesday 10 March 2015 I had a blood test and CT scans for stomach, pelvic and chest with intravenous dye. Blood test went smoothly, the scan not quite to plan. The hour prior to the scan it is a requirement to drink 1.5 litres of water - with nausea it went through me quite quickly clearing out my system lol! An hour delay and then trouble inserting the needle for the dye as my veins are quite depleted due to the years of chemo and tend to collapse at the best of times. However it went okay and home to wait for my oncology visit Weds evening to see Dr Alan Zimet (11 March).

My oncology visit with Dr Zimet - Blood tests showed red blood cells depleted (haemoglobin 9.2) and also very very anaemic so an urgent blood transfusion of 2 units blood was ordered for Friday morning (13 March). This is a pretty good result considering the last 4 units of blood transfusion (when haemoglobin was 7.6) was mid January so this one combined with extensive radiation in that time has lasted 2 months. I had the blood transfusions yesterday - 5 hours all up - so pretty quick. The day chemo staff all know me at John Fawkner Hospital in Melbourne and have followed my journey since day one. They are all a unique and wonderful bunch of nursing staff whose care of the patients is paramount in ensuring that they are comfortable from the time they walk in the door to the time they leave. It is the same with the Oncology ward - since day 1 of my journey in 2003 they have been there all the way (some oldies and of course some new nursing staff along the way) all devoted to the care of the patient being their number one priority.

Scan results - No real change since last scan in mid January when it was the very serious scan with not so good results. Dr Zimet said that it was too early for this scan (4 weeks after finishing radiation). The radiation is still working slowly and will take another 4 to 6 weeks before anything shows up on another scan. The tumour piercing into the stomach appears to have grown slightly in one of the measurements and shrunk slightly in another measurement! So still pretty danger stage with tumours/fluid/stomach/arteries/blood vessels and we are now on a watch and come back for a visit in 3 weeks. If anything presents itself prior to that - have a blood test and ring Dr Zimet/hospital. I am improving each day although the fatigue is still my No. 1 friend!

Flying still not approved until the next blood test (in 3 weeks) appointment with Dr Zimet ... so unfortunately my plans to attend ADAO's 11th Annual Asbestos Conference in Washington DC as a speaker and mesothelioma warrior has been cancelled! This year the Conference will be made extra special with the recent announcement this week in America with the Legislation introduced by Sens. Barbara Boxer, D-Calif., and Edward Markey, D-Mass., to fix the nation’s badly broken and outdated chemical safety law would be a major step in ensuring that Americans, especially children, are protected from toxic substances.

The Boxer-Markey bill, titled the Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act, would correct major weaknesses of the 1976 Toxic Substances Control Act, or TSCA. It would ensure that all chemicals be proven to pose a “reasonable certainty of no harm” -- the same standard required for pesticides on produce and food chemicals.

CLOSER TO AN ASBESTOS BAN!!! U.S. Senator Barbara Boxer, pictured here with ADAO President and Co-founder Linda Reinstein, and her beautiful daughter, Emily, signed a copy of The Alan Reinstein and Trevor Schaffer Toxic Chemical Protection Act. ADAO has been at the forefront of working with Congress to get asbestos banned. This is why ADAO needs your donations!! So our children, and grandchildren will never have to suffer from mesothelioma and other asbestos-related diseases.Linda Reinstein and ADAO released this press release 13 March 2015.PRESS RELEASE - http://bit.ly/1NPU9GwThese past eight days moved fast. Sen. Boxer called me last Tuesday asking to name her TSCA reform bill after Alan and all of the hundreds of thousands of "Alans." The new Boxer-Markey bill, "The Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act", will update the outdated 1976 TSCA bill and empower the EPA to finally ban asbestos and regulate an estimated 80,000 chemicals. This would not be possible without all of our supporters, volunteers, donors, and sponsors – Congratulations to all! I can say with sincerity that when Doug Larkin and I co-founded ADAO in 2004, that neither the Larkin nor the Reinstein families could have ever envisioned a day when a piece of legislation aimed at reforming our laws to influence a ban on asbestos and seek to further our education and awareness mission - would be named after one of our loved ones who influenced our founding. We are humbled by this bill's introduction that names all asbestos victims and their families in spirit and showcases the power of our united efforts to end the tragedies associated with asbestos. Special thanks to Kimberly Starr Cecchini - who spent HOURS in the last 48 hours working on press releases and communication.